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Please send success stories! How are you fighting/beating ALS?

excelwithkat
0 Recommendations

Hi. I was diagnosed 1 month ago after 8 long months of testing for everything from carpul tunnel to osteoarthritis. I need to hear your success stories...how are you slowing or STOPPing the progression of this horrible disease? Please share with me, I need encouragement badly. So far it is confined to my left arm and hand. My goal is to work 3 more years (retirement eligible) AND stop this thing, or at least make sure I'm one of those who will live another 20 years. You can email me directly if you would like -- excelwithkat@yahoo.com I know a positive attitude can make a huge difference, and right now I need serious help in maintaining that attitude. Thanks in advance. --Kat

Explore topics in this discussion:

Zanaflex ALS Provigil Zyrtec Osteoarthritis Rilutek Baclofen

10 replies

fec139

Hi,
I am sorry you got this diagnosis, and even sorrier that we are given no hope when we receive this grim dx. We are all looking for hope.

But please be careful about following anybody who promises a "cure". In my 5 years with this illness, I have heard heartbreaking tales of PALS spending astronomical amounts of money on quack "cures" and treatments, often in foreign countries. In some cases, they feel better immediately after, only to progress more quickly after the brief period of "improvement".

I personally know one family who used all their life savings and the equity in their home for "treatments" by a doctor who refused to release his data to the ALS community. This sent up a red flag for me when they tried to get me to do the same. I am so glad I didn't!

Please please check with you ALS care team before you spend money on any "miracle"

Fern Cohen in NY
DX 1/04

greensmile

hi :)
you should definitely build your trust in G-d because He's always their for you.also it's good to stay ahead of the situation,and make sure your general health is good.always keep a smile upon your face,because there will always be those special times,and things happening in your daily life.maintain a good sense of humor,as laughing is conducive to good health and peace of mind.keep the faith,never ever give up and don't let any doctor tell you how long you have here on earth,only the Lord knows that.
lots of hugs,prayers,and smiles to you and yours. :) :) :) :) :)

metaroc

Hey Kat...

I was DX with ALS in 1999, started having symptoms in 1995...
This is what I do, and it works for me:

First I trust in God, I give it up to him to sustain me, he gives me peace beyond understanding, I know everything will be alright, one day at a time...

Second I choose to have a positive attitude, no matter what...

Third, I cherish every day, i have left, by making every day count, concentrate on what I can do, not on what i can't...

fourth, Cherish my family and friends, don''t hold grudges, forgive all...

mikerayl.com

joe

Kat,

I too am sorry for your diagnosis. I know how I felt when I was first diagnosed, I was crushed. Then I got mad and said to myself I can fight this. That was on December 28, 1995, and I am still fighting. I am very active with our local ALS support group and I am very active in spreading the word about ALS.

I go to the Cleveland Clinic every six months to be evaluated. The Doctor and his staff are very positive and will try any thing I suggest to stop my progress. They put me on a strict regiment of vitamins and pills for the stiffness and moods. Below is a list of my meds.

PROVIGIL 200 MG 2 TABLET DAILY; QUINIDINE 10MG/DEXTROMETH 30MG (1) 2 TIMES DAILY; RILUTEK 50 MG (1) 2 TIMES DAILY
AMITRIPTYLIN 25 MG 1 TABLET DAILY; ZYRTEC 10 MG 1 TABLET DAILY; SELENIUM 200 MG, 1 TABLET DAILY; VITAMIN E 400 I.U., 1 DAILY ; VITAMIN C 500 MG 1 TABLET DAILY ; B-12 2000 MCG 1 DAILY ; MULTIVITAMIN 1 DAILY ; ALPHA LIPOIC ACID 200 MGS DAILY
ZANAFLEX 4 MG AS NEEDED; BACLOFEN PUMP and CREATION.

Kat, I am lucky that I am still working 40 hours a week as a toll collector on the Pa. Turnpike. I use a three wheeled to get around for balance. And I try to live a normal life.

What I found is to embrace your ALS and live one day at a time. I have a great supportive family and friends. Our ALS support group out of Pittsburgh is very active in fund raising and other activities to get the word out on ALS. I have spoke to 75 fourth graders on behalf of the ALS support group. The fourth graders had just finished studying about Lou Gehrig’s life. I have gone to D.C. for National Advocacy Days in May, and I have worked several booths at different events for ALS awareness.

So I say get active with your ALS and allow yourself about five minutes a day to feel sorry for yourself then get up and fight!!!!!

Joe Hrezo

Chuck1106

I was DX in Jun 08, symptons 10/07. The neurologist gave me three to five years. I said horses---. I will do better than that. Though I have progressed relatively rapidly,,I think the key thing is keeping a positive attitude. I always try to do that. I am not hesitant to joke around, especially when the joke is on me. I always try to keep a smile on my face.

And I read the Bible, pray, etc. It all works.
Good luck
Chuck

excelwithkat

Thank you, all, and especially Joe. You give me great hope. I just got back from my second visit to the ALS clinic in San Francisco where I signed up for their most recent research trial.

Where do you all stand on Rilutek? I know Joe said he takes it. Do you believe the results outweigh the high cost of this med or not?

Thanks again for your words and kind thought s. I did join the yahoo group as well... --Kat

joe

KAT,
YOU MAY WANT TO CHECK WITH THE RILUTEK PEOPLE. I THINK THEY HAVE A PROGRAM WHERE YOU CAN GET THE MEDICINE AT A REDUCED RATE. I SURE HOPE SO. THEY SAY IT ADDS ABOUT 3 TO 6 MONTHS, I HAVE BEEN TAKING IT SINCE OCT. OF 2001. SO I GUESS IT HELPS.
"LIVE ONE DAY AT A TIME" AND LIVE IT TO THE FULLEST. GOOD LUCK. JOE

excelwithkat

Joe,

Can you explain to me what all those meds and supplements are and what they are supposed to do? You can e-mail me privately if you'd rather -- excelwithkat@yahoo.com

I am in the process of filling out the forms for NORD to apply for assistance.

Thanks! --Kat

excelwithkat

Chuck, are you taking the drug Rilutek? I'm curious to know if you think the benefits outweigh the cost. My family members all want me to take it...if you do take it, do you have any of the side effects listed? Thanks for your help...

BarbH

I totally understand you needing encouragement. This disease is so unfair to all involved. I want you to hold your head up high and keep a positive attitude. For your attitude has alot to do with how well your going to do. My husband was diagnosised with ALS 16 years ago. He was also told he only had 3-5 years to live. DON'T let anyone number your days. Please keep yourself in a good mind set and fight til you can't fight no more. This disease is a tough one and it is so unfair. I don't know why things like this have to happen to people, but make the best of it. God has a plan for each and everyone one of us. We may not know what those plans are, but HE does. I have you in my prayers and I pray for your family also. Please stay positive, fight this fight with us. Goodluck my friend.

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